Mothers create homes for children with severe disabilities

Four mothers have created a home where their adult children with severe complex disabilities can receive support and live separately from their parents, LRT reported. The initiative was launched after the families failed to receive the help they said they needed from the state.

Last year, the Nepatogūs foundation opened its first project, a home designed for people with severe complex disabilities. The foundation was established by Henrika, Nijolė, Snežana and Laima, whose children have severe complex disabilities.

The mothers had campaigned for changes to the system but eventually decided to act themselves. With the help of staff, their children can now live as independently as possible in a home adapted to their individual needs.

Henrika Varnienė and Laima Ingileikienė say the home has changed not only their children’s lives, but their own as well. While staff care for the young people, their parents can take a break, go to the cinema and spend time on other activities.

The home does not resemble a hospital or nursing centre. It has a spacious living room, a kitchen and four bedrooms, each with its own bathroom. Every room is different, with the young people choosing various items together with their parents.

Staff are present at all times to ensure the residents’ safety, help them when necessary and support them in living as independently as possible. In Aušra’s room, rules instruct staff to let her move around on her own, provide only minimal assistance and not rush her.

Aušra’s room shares a bathroom with Kaja’s room. When the home was being equipped, the plan was to install a special ceiling lift that could assist both residents.

“It would be much more convenient for both the staff and the residents themselves. If Aušra lived with me at home, I could apply for state support to buy such a lift, but because Aušra lives here, I am no longer eligible for that assistance,” Varnienė said.

Varnienė and Ingileikienė said the home was created because suitable support for people with severe disabilities was not available. They said the only option for a person with a severe disability to leave their parents’ home had been a nursing hospital, where the conditions were those of a hospital.

They added that independent living homes are intended for people with less severe disabilities and are not suitable for their children, who require more staff and a quieter environment.